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It Is Not A Hospital Discharge… It Is A Community Admission PowerPoint PPT Presentation


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It Is Not A Hospital Discharge… It Is A Community Admission. It Is More Than Health Care ... Fitting the pieces together. Socia l. Literature. $. Dev/Educ. Technol. OVERVIEW. Medical Home for CWD - a little different Working with the educational system

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It Is Not A Hospital Discharge…

It Is A Community Admission


It Is More Than Health Care...Fitting the pieces together

Social

Literature

$

Dev/Educ

Technol


OVERVIEW

  • Medical Home for CWD - a little different

  • Working with the educational system

    • IFSP and early intervention programs

    • IEP and the education system

    • ITP and transition to adulthood

  • Accessing community resources

    • parent educ, advocacy, support

    • community agencies

    • respite and recreation

    • financial

  • Educating the PCP


  • Special KidsSpecial Skills ???(not really)


    But, a few more....

    • assessment tools

    • team members

    • community supports

    • minutes

    • dollars


    Medical Home

    • traditional pediatric care

    • emphasizes a mutual relationship

    • broad health care plan

      • medical (traditional and non-traditional)

      • developmental

      • behavioral

      • educational

      • social

  • long range (infancy to adulthood)


  • Components of any Medical Home (MH)

    • accessible

    • continuous (age & spectrum of care)

    • compassionate

    • comprehensive

    • coordinated

    • culturally competent

    • family-centered


    Child/Family, includes family support resources

    Pediatrician and other medical providers

    School, includes early intervention

    Community-Based Team

    Insurance providers/financial resources

    Religion /spiritual supports

    Social Services, includes mental health


    CWD: Additional Components

    Broader array of assessment tools

    Awareness of community resources

    Team Skills vs Care Coordination Skills:

    • medical and surgical subspecialists

    • social workers and home health nurses

    • therapists, orthotists, prosthetists, DME vendors

    • intervention specialists, teachers, ed diagnos

    • counselors, psychol, behavior mgmt specialists

      Advocacy Skills:

    • authorizations for medical care

    • authorizations for school related services

    • financial assistance programs

    • public policy issues


    The “Standard” Assessment

    • History

      • Chief complaint

      • History of present illness

      • Pregnancy and neonatal history

      • Family history

      • Developmental and school history

      • Review of systems

  • Physical Exam

  • Screenings

    • hearing and vision

    • growth and development

    • dental

    • Hct, etc


  • Beyond the “Standard” Assessment

    • Developmental

    • Socio-emotional

    • Functional

    • Educational

    • Transitional


    Developmental

    • AAP emphasis on the developing brain

    • Developmental monitoring

      • Screening

      • Surveillance

      • Assessment

  • Goal: Early referral to an early intervention program (EIP)


  • Questionnaires

    PDQ

    AAP

    EIP

    Customized

    Observation

    Denver - II

    ELMS

    CAT/CLAMS

    BINS

    Dev Profile - II

    Screening Tools


    Surveillance

    • The art of being suspicious

    • Parental concerns are valid!!!

    • Continuous monitoring at every visit

      • Pre-printed milestone checklists

      • Developmental milestone tables (texts/articles)

      • Use of standardized tools to validate suspicions

  • Developmental age for eachstream

    developmental age

    chronological age

    > 85% is normal

    70 - 85% is suspect

    < 70 %is abnormal


  • EXAMPLES

    10 mos old w/ GM skills solid to 8 mos

    8 mos = 80%

    10 mos

    10 mos old w/ GM skills solid to 6 mos

    6 mos = 60%

    10 mos


    Developmental Assessment

    • Targets children at risk

    • Time consuming

    • Requires training and expertise

    • Often performed by a team

    • Assesses quality as well as skill level

    • Addresses etiology (neuro, genet, etc)


    Functional Assessment

    • Follows developmental assessments

    • Assesses the child’s ability to perform skills independently w/wo devices

      • Mobility

      • Communication

      • Self Help: feeding, dressing, hygiene

  • Standardized tools

    • Vineland

    • WeeFIM

    • PEDI

    • AAMR


  • Early Intervention Programs

    • Available to infants from the time of diagnosis until age 3 years

      • Known disability

      • Developmental delay

      • At risk for disability or delay

  • Promote development & family function

  • Mandated by the IDEA entitlement

  • Large menu of services

    • parent education, empowerment, advocacy

    • habilitation services (OT, PT, ST, behav mgmt)

    • assistive technology

    • respite, transportation, etc


  • Evolution of IEP’s

    • Privately funded . . . . Publicly funded

    • Open referral . . . . . . Geographic assign

    • Multidisciplinary . . . . Transdisciplinary

    • Center-based . . . . . . . Home based or DCC

    • Child centered . . . . . . Family centered

    • IDP. . . . . . . . . . . . . . . . .IFSP


    EIP:Pediatrician’s Role

    • Referral - early, don’t wait for DX

      - “48 Hour Rule”

    • Medical assessment

      • etiology vs co-existing disorders

      • subspecialty consultations

  • Care Coordination

  • Development of the IFSP

  • Authorizations for treatment

  • Education of providers re: diagnosis

  • Communication and monitoring


  • Transition to School

    • Occurs at age three years

    • Individual Education Plan (IEP)

    • Based on an educational assessment

    • Physician advocacy

      may be necessary


    Educational Supports

    • Re-authorization of the IDEA (1997)

    • Entitlement: DX 21 yrs

    • Special education techniques & staff

    • Related services (PT, OT, ST, RN)

    • Assistive technology

    • Extended year services

    • Non-educational services

    • Transitional services


    Components of an IEP

    • Current level of functioning and DX

    • Goals and objectives for school year

    • Related services needed to goals

      • special education

      • therapy (PT, OT, ST) and nursing

      • assistive technology devices

  • Frequency, duration and provider of related services


  • Components of an IEP

    • Placement (LRE philosophy)

    • Supports needed for LRE placement

    • Transitional services - if > 14 years old

    • Extra curricular activities

      • Respite (“non-education funds”)

      • Extended year services

      • Recreation

  • Monitoring of progress

    • Tools

    • Frequency

  • Signatures


  • Physician’s Role in the IEP

    • Authorize for svc via medical categories:

      • Other Health Impaired (ADHD, CHI, SZ)

      • Orthopedically Handicapped

      • Vision and/or Hearing Impaired

      • MR diagnoses (Down, FXS, William's)

  • Advocate for psychometric testing

  • Evaluate for co-existing health concerns…..authorize medical Rx

  • Coordination of services

  • Communication and educ (med<-- >EIP)

  • Advocate for related svc & assist technol


  • Medically-based Therapy

    • health care service requiring physician Rx

    • requires insurance/HMO pre-authorization

    • addresses periodic life issues

      • new equipment (braces, crutches, W/C)

      • post surgical

      • transition to oral feeding

        Educational-based Therapy

  • provided at no cost (gov subsidized)

  • usually consultative

  • addresses devel and educ milestones

  • driven by the IFSP services at home

  • driven by the IEP services at school


  • Assistive Technology

    • Purpose:to prevent (or decrease) deformity

      to increase function

    • Timing is critical and depends on DD

    • Low tech vs. high tech devices

      • Positioning

      • Mobility

      • ADL (activities of daily living)

      • Communication

      • Educational

      • Recreational

  • Service animals


  • Assistive TechnologyClearing Houses

    • Abledata

    • RESNA

    • Alliance for Tech Access

    • TRACE


    Computer Technology

    • Apple: 1-800-600-7808

    • IBM: CAT (Center for Adapted Tech)

      Easter Seals in Colorado

      Phone: 1-303-233-1666

      Fax: 1-303-233-1028

    • RJ Cooper Software

      24843 Del Prado

      Dana Point CA 92629


    Service Dog Information

    • Houston: (281) 497-2505

    • Austin: (512)891-9090

    • Website: www.THSD.com


    Transition

    School Work

    Home Community

    Pediatric Adult Care Centered Care


    School Work

    Background: PACER Center

    • ADA (1990)

    • Rehab Act (1992):“supportive employment”

    • IDEA (1990 and reauthorized in 1997)

      Individualized Transition Plan (ITP)

    • supplements or replaces the IEP at age 16

    • student becomes a member of the team

    • identify vocational goals

    • addresses training (OJT and volunteer)

    • community agencies and services

    • rehab counselor is important team member

    • evaluation of progress


    Home Community

    Training (informal &/or formal ILS classes)

    • early responsibility for self-care, hygiene

    • behavior, social skills, and leisure activities

    • homemaking (cooking, cleaning, laundry)

    • financial and budgeting

    • public transportation or adaptive vehicles

    • interview, hire, supervise & fire attendants

      Settings: LRE

    • institutional

    • group homes

    • apartments

    • own home with/without spouse


    Transition in Health Care

    Preparation

    • Encourage responsibility for own care

    • Should be planned, not crisis initiated

    • Identification of new adult provider(s)

    • Transition interview

    • Self-directed portable records

    • Teaching physical exam

      Process

    • Evaluate readiness*

    • Record sharing and open communication

    • Overlap in care

    • Then let go………. but do not abandon


    Transition in Health Care Barriers

    • lack of readiness (teen, parent, doctors)

    • strong emotional attachments

    • reluctant adult care providers

    • few multidisciplinary options

    • lack of funding


    Guardianship: The Alternative to Transition

    • Formal determination is now required at 18 years of age

    • Often triggered by surgery or a hospitalization

    • Requires legal action, not by default

      • petition must be filed

      • court hearing

  • Costs between $500 - $2000


  • Guardianship

    • Is different from conservatorship of the estate

    • Responsible for all decisions except:

      • psychosurgery

      • electric shock therapy

      • sterilization

      • experimental treatments

  • If teen is borderline alternatives

  • Kinship is not the conclusive factor in determining the guardian


  • OVERVIEW

    • Medical Home for CWD

    • Working with the educational system

      • IFSP and early intervention programs

      • IEP and the education system

      • ITP and transition to adulthood

  • Accessing community resources

    • parent educ, advocacy, support

    • community agencies

    • respite and recreation

    • financial

  • Educating the PCP


  • Community Supports

    • In the family’s eyes, these are often more critical than medical services when caring for CWD

    • Lack of physician knowledge and expertise often the source of parental discontent

    • Surveys reveal physician-parent mismatch


    Levels of Support

    • Natural

      • family

      • neighbors

      • friends

  • Informal

    • clinic and IEP contacts

    • parent support groups

    • community agencies

    • Literature & Internet

  • Formal Entitlements

    • education (IEP and schools)

    • Medicaid, SSI


  • Formal

    Informal

    Natural


    Informal Supports

    • Parent Literature and Web sites

    • Parent Support Organizations

    • Peer Support Organizations

    • Community Agencies

    • Child Care

    • Respite and Respite Care Waivers

    • Recreation

    • Organized Sports


    Parent Literature

    • Exceptional Parent Magazine

      • Monthly publication (articles, advertisments)

      • Special inserts (spasticity, mitochondrial DO)

      • Family Library

      • Annual Resource Guide

      • Web site

      • Search and Respond

  • Brookes Publishing

  • Woodbine House

  • Medic Publishing

  • AACPDM List


  • CWD Web Sites for Families

    • Ctr of Children with CI & D

    • Exceptional Parent Magazine

    • Family Voices

    • MUMS (parent support)

    • Natl Ctr for Youth with Disabilities

    • National Parent Network on Disabilities

    • NICHCY

    • Our Kids


    OVERVIEW

    • Medical Home for CWD

    • Working with the educational system

      • IFSP and early intervention programs

      • IEP and the education system

      • ITP and transition to adulthood

  • Accessing community resources

    • parent educ, advocacy, support

    • community agencies

    • respite and recreation

    • financial

  • Educating the PCP


  • CWD Web Sites for Families

    • Ctr of Children with CI & D

    • Exceptional Parent Magazine

    • Family Voices

    • MUMS (parent support)

    • Natl Ctr for Youth with Disabilities

    • National Parent Network on Disabilities

    • NICHCY

    • Our Kids


    Parent Support Groups

    • Disability-Specific Agencies

      • National: literature, research, referral

        directories, conferences

      • Local: parent-to-parent support,

        meetings, literature

  • Parent Training and Information Ctr

    • Disability rights

    • Advocacy training

  • Family Voices - political advocacy

  • SNAP (Special Needs Adocacy for Parents)

  • Internet Disability Chat Rooms


  • Peer-Support Groups

    • Friends Health Connection

    • Winners on Wheels

    • NICHCY

    • Disability-Specific Chat Rooms

    • Sib-Shops (206-368-4911)


    Informal Supports

    • Parent Literature

    • Parent Support Organizations

    • Peer Support Organizations

    • Community Agencies

    • Child Care

    • Respite and Respite Care Waivers

    • Recreation

    • Organized Sports


    Respite: Benefits

    • A break from the day to day care-taking responsibilities

    • Supports families in their parenting role

    • Improves stamina, re-energizes parents

    • Allows renewal of spousal relationships

    • Provides special time w/ normal children

    • CSHCN raised at home better outcome

    • CSHSN raised at home cost society less


    1. Respite

    2. Respite

    3. Respite

    4. Respite

    5. Respite

    6. Respite

    7. Respite

    8. Respite

    9. Respite

    10. Respite


    Respite: Varying Needs

    • High need

      • dual working parents

      • mobile families (military)

      • no extended family

      • medically fragile child - 24 hr monitoring

      • children with disabilities who do not sleep

      • aggressive children who bite or destroy

  • Low need

    • multiple adult siblings

    • large extended family, neighbors, friends

    • non-ambulatory(but healthy) child w/ CP/SB


  • Respite Models

    • Center-based

    • In-home

    • Family Co-op

    • Emergency

    • Hospitality


    Respite Waivers

    • Goal: to provide the support needed

      to raise the child at home

    • Eligibility: Dx and burden ---not $$$

    • Funding

      • Medically-fragile based funds

      • Cognitive-behavioral based funds

  • Wide variation among states

    • Agencies providing the funds / service

    • Eligibility criteria

    • Amount of funding available

  • Long-waiting lists


  • Recreation

    • Travel

      • Travelin Talk

      • Accessible Travel Magazine

      • Access-Able Travel Source

      • S.A.T.H.

  • Theme parks - EP directory

  • National parks

  • Camping*

  • Toys


  • Travel Resource Information

    Travelin Talk: (615) 552-6670

    Access-Able Travel Source: (303) 232-2979 www.access-able.com

    Access To Travel Magazine: (518) 4394146

    Wheelchair Getaways: (800) 642-2042

    SATH (Society for the Advancement of Travel for the Handicapped):

    (212) 447-7284 www.SATH.org


    Organized Sports

    • Special Olympics

    • Wheel Chair Sports

    • USA CP Athletic Assoc


    Informal Supports

    • Parent Literature

    • Parent Support Organizations

    • Peer Support Organizations

    • Community Agencies

    • Child Care

    • Respite and Respite Care Waivers

    • Recreation

    • Organized Sports


    Formal

    Informal

    Natural


    Formal Supports

    • Educational

    • Financial

      • Insurance - Medicaid

      • SSI

      • Special Needs Wills

  • Barrier free environments

  • Personal care assistants

  • Legal assistance


  • Financial Assistance

    • Health Insurance

    • SSI

    • Special Needs Will

      (Supplemental Trust)


    Health Insurance

    • Medicaid:managed care

    • Title V:limited scope

    • TANF:replaced AFDC

    • SCHIP:# ofuninsured children < 200% poverty level

      $50Bstate block grants

      gov choice: MC or new


    Social Security Income

    • Cash assistance program (995,000)

    • Welfare reform - Aug 97

    • New policy - redetermination

      • Categorical Diagnosis

      • Severe Functional Limitation

  • Termination of benefits:mean = 56%

    • Miss = 81%, Texas = 79%

    • Hawaii = 27% Calf = 39%

  • Appeal process: 18% 60% success

  • Remain MC eligible: lower asset criterion


  • “Special Needs Will”Supplemental Trust Fund

    • Conventional wills that provide assets disqualify CwD for fed $$

    • Gov agencies can bill inheritance for services - current and past

    • Inheritance quickly exhausted

    • Siblings’ share also at risk

    • Language of a SNW must be clear -

      “Trust is to provide extras -- over & above those resulting from fed $$”


    Formal Supports

    • Educational

    • Financial

      • Insurance - Medicaid

      • SSI

      • Special Needs Will

  • Barrier free environments

  • Personal care assistants

  • Legal assistance


  • Education of the PCP

    • Medical School Curriculum

    • Residency Training

      • Screening and surveillance

      • Strategies for working w/ educational sys

      • Community supports and strategy for accessing in future assignments

      • Parents as teachers

  • Exceptional Parent Magazine subscription

  • The DDRC at C.A.M.P.


  • Summary

    • Medical Home for CWD

    • Working with the educational system

      • IFSP and early intervention programs

      • IEP and the education system

      • ITP and transition to adulthood

  • Accessing community resources

    • parent educ, advocacy, support

    • community agencies

    • respite and recreation

    • financial

  • Educating the PCP


  • The Role of the French Physician (15th century)

    • To cure sometimes

    • To relieve often

    • To comfort always


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